Search Results
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… about volunteers who have chosen to participate in the studies. This raises the question of when and how it … this data is often made available, with appropriate protections for study participants, to the scientific … Insurance Portability and Accountability Act (HIPAA) Privacy Rule also plays a currently ambiguous role regarding …
Research Funding
A collaborative large-scale genome sequencing effort to identify rare risk and protective variants contributing to multiple common disease phenotypes.
… designs to better understand the general principles of genomic architecture underlying common, complex inherited … approaches and technologies for multiple disease research communities and the wider biomedical research community. The CCDGs study cardiovascular diseases …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
… Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome … NIH and grantee partners on data sharing and privacy policy issues. For the last three years, she has … matters. Within NHGRI, she holds a joint appointment in the Policy and Program Analysis Branch (PPAB), where she …
Staff
Cristina Kapustij is the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute.
… policy positions on issues arising from the translation of genomic research discoveries to uses within the public domain. In addition to advising Institute leadership on a broad range … Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research participant protection … …
Research Funding
A list of funding opportunities in genomics research provided by NHGRI and the National Institutes of Health.
… The National Human Genome Research Institute supports research and training and career development opportunities in support of its research mission which is to accelerate … on the Impact of and Methods for Implementing Regional Genomic Medicine eConsult Services (U01 Clinical Trials …
Talking Glossary
La hibridación in situ es una técnica de laboratorio empleada para localizar una secuencia de ADN o ARN en una muestra biológica.
… Hibridación in situ … La hibridación in situ es una técnica de laboratorio empleada para localizar … una secuencia de ADN o ARN en una muestra biológica. … In situ hybridization is a laboratory technique used to …
Research Training
An opportunity for students to receive individualized research mentoring, learn about careers in genomics and have access to a network of early-career genome scientists.
… includes people from groups currently underrepresented in the genomics enterprise.” – Eric Green, M.D., Ph.D., NHGRI Director … The National Human Genome Research Institute (NHGRI) Division of Intramural Research is … involved in human diseases. These efforts have used genomic sequence data from humans and other species to …
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.
… The final version of the Common Rule was published in the Federal Register on January 19, 2017, following the … consent forms. They will also facilitate research with protections that are proportional to risks as well as … these technologies along with recommendations on consent, privacy, and data protections that will go through a public …
Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely … that this will not always be possible or appropriate. In addition, individual participants who do not consent to …
Research at NHGRI
The NHGRI Intramural Research Award recognizes research achievements by trainees in basic, clinical, and social behavioral science research.
… The NHGRI Intramural Research Award distinguishes meritorious research … Ph.D. Every year, NHGRI recognizes outstanding trainees in the Division of Intramural Research by granting the NHGRI Intramural Research Award. Awards are given in recognition of the full spectrum of research conducted …